no more RLS!!

[cesoni]

A huge thank you to SueJohnson for recommending me to go to Dr Mark Buchfuhrer. He knows RLS inside out. After spending a good hour with him about my history with RLS he prescribed Buprenorphine sublingual films. The first night i stopped cold turkey Ropinerole and Gabapentin and took one-fourth of the sublingual film and like magic my RLS disappeared. Buprenorphine should be prescribed to everyone with RLS. I still canbelieve that after 20 years my RLS symptoms disappeared. Thank you, Sue!

[SueJohnson]

That's great!!! So pleased for you.😀

[Spaceclaim]

Great news but your symptoms only subside when you take this medication right? What are the long term side effects of it?

[Joolsg in reply to Spaceclaim]

None.I've been on it over 3 years. My RLS disappeared overnight. Of course I'll have to take Buprenorphine for life, but it is miraculous. On Ropinirole for 12 years and it stopped working after 4 or 5 years. I spent the next 7 years in denial, compounded by ignorant Doctors who told me it was disease progression and there was nothing else.

[SueJohnson in reply to Spaceclaim]

Welcome to the forum. You will find lots of help, support and understanding here.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

By the way it would really help us to give you advice if you would indicate on your profile what country you live

[SueJohnson in reply to Spaceclaim]

All medicines have side effects, even aspirin. Some can't be tolerated. Some can be managed. Some disappear after a few weeks. Some are worth it for the relief from RLS. Some people have none.

[cesoni in reply to Spaceclaim]

I do have to take it every night so Symptoms are gone. I even took a nap one day, I haven’t been able to do that in almost 20 years, as soon as a laid down the legs would start bothering me. Only side effects a had for the first 3 days was a very mild headache the next day, it stopped on the 4th day. What is so unbelievable is that I stopped taking ropinerole and Gabapentin cold turkey and had no withdrawal symptoms whatsoever. Its a game changer!

[FigureItOut in reply to Spaceclaim]

Exactly right!

[Joolsg]

Fantastic.I also had miraculous results on it.

I've just spoken to a research team at Cambridge University, UK, and they've asked me to compile evidence of Buprenorphine's effectiveness to support a plea for funding of a Cambridge University trial.

Would you be willing to let me share your story?

If so, I'll message you.

After 3 years, I still take the same low dose of 0.4mg and have ZERO RLS night or day. I sleep 8 hour's a night.

[cesoni in reply to Joolsg]

Absolutely!

[CsiguZ in reply to Joolsg]

Comparing to other opioids like tramadol, what are the benefits of Buprenorphine for RLS?

[Joolsg in reply to CsiguZ]

It has a half life of 25 hours and releases most of active ingredient in first 11 hours. So, no mini opioid withdrawals during the day, which are common for RLS patients and the main symptom of opioid withdrawals is RLS.I tried tramadol and was on Oxycontin for 5 years. It didn't really help. I still had very severe RLS and was up 2 or 3 times a night.

On Buprenorphine, my RLS disappeared. Completely. Three years later, still zero RLS.

[CsiguZ in reply to Joolsg]

Thanks Joolsg. And do you use sublingual from it? How much time does it take to be effective after you take it? And do you know if it was effective against PLMD as well? For me Tramadol is quite effective for RLS, it takes approximately 1,5 hours to kick in, but sometimes (especially if the temperature is high) I experience RLS symptoms regardless if I take Tramadol in time.

[teakabeagle in reply to CsiguZ]

I take .5 mg sublingual tablets at night. Seems to take about 30 minutes if I get symptoms before I take it. I will get symptoms at different times so I don’t always catch it before it happens.

[CsiguZ in reply to teakabeagle]

In my country all medicines which contains buprenorphine also contains naloxone. Do your meds contains only buprenorphine?

[teakabeagle in reply to CsiguZ]

Yes, only Buprenorphine. I’m in the US.

[Stanspl in reply to Joolsg]

Deffo

[funnyfennel in reply to Joolsg]

Wow.... I hope for that. I'm just going to see a neurologist and I will suggest that to him

[Boldgirl45]

Hi there - I guess this guy is States side ? Does he do online consulting? Is it super difficult to get an appointment? Thanks !

[cesoni in reply to Boldgirl45]

Here is his info

rlshelp.org/office.htm

[Boldgirl45 in reply to cesoni]

Thank you so much!

[Boldgirl45 in reply to cesoni]

and sorry just to be clear - no withdrawals from the others??

[cesoni in reply to Boldgirl45]

none

[Boldgirl45 in reply to cesoni]

That’s amazing - thanks !

[Boldgirl45 in reply to cesoni]

with the. Ropinerole were you ok or for a long time / at a highish dose?

Sorry about all the questions 😊

[cesoni in reply to Boldgirl45]

I took 4mg of ropinerole for almost 15 years

[Boldgirl45 in reply to cesoni]

thanks so much! I wonder if it's common about the lack of withdrawal with the introduction of this drug. Great to hear and I'm so glad it's helped you so much!

[SueJohnson in reply to Boldgirl45]

He will answer emails and is very helpful [e-mail]

[Boldgirl45 in reply to SueJohnson]

Thank you so much Sue. Is he the chap where you have to be incredibly careful about using perfect grammar 😅. Just so that I’m on my grammar A game 😂

[SueJohnson in reply to Boldgirl45]

No

[Boldgirl45 in reply to SueJohnson]

OK thanks - wondering who that was now....but thank you!

[amrob123 in reply to Boldgirl45]

I had heard from this forum that he's particular about grammar (not sure how true it is). Even if true, IMO it's worth overlooking a little pedantry to access his extremely generous help!

[Boldgirl45 in reply to amrob123]

I don’t mind at all. To be honest I’m a little pedantic myself 😅. I was just checking how formal my approach needed to be . Thank you !

[SleeplessinMO]

Did you know that RLS can be a symptom of kidney disease?

[SueJohnson in reply to SleeplessinMO]

It's not really a symptom of kidney disease but often people have both.

[BocaMom]

Wow this is great news - WTG!!!!

[TheDoDahMan]

Dr Buchfuhrer saved my life also, but with a prescription for low-dose (10mg/day) methadone, not buprenorphine. Do you (or anyone) know why he prescribes one versus the other? As a medicare patient, I pay about $15/month for the methadone - could price be a factor?

[LotteM in reply to TheDoDahMan]

Why not get in touch with dr Buchfuhrer and ask him. Buprenorphine has only fairly recently been ‘rediscovered’ and also in its use for RLS. Dr B has been prescribing it dor most of this time, mostly as buccal film (low dose with highest absorption of the various forms in which it comes).

Methadone still working OK?

[TheDoDahMan in reply to LotteM]

Hi, Lotte,

Yup, the methadone still works well for lo these 5+ years. I somehow got it in my head that bupe might be more expensive.

[teakabeagle in reply to TheDoDahMan]

I’m on Medicare and the Buprenorphine is $12, but that can vary based on your pharmacy plan. I use the SL tablets as the film is much more expensive. I don’t have any problems with the tablet other than cutting them into quarters. They have a tendency to crumble.

[cesoni]

I paid $100 for mine

[Doctorplacebo]

One more buprenorphine success story to report. I use the 7-day patch and have no RLS symptoms (previously had augmented RLS symptoms 24 hrs/day and no life). I use the 7.5 MICROgram/hr patch. Times 24 hr/day that comes out to just 180 mcg/day or 0.18 milligrams per day! With private insurance it costs me $10/month.

[Huntingleroy]

Its amazing isnt it ?